Ms. Suzy & Mom: Correspondents from the Trenches

March 12, 2020

Today is the anniversary of the airplane crash three decades ago, in which my husband and teen-aged son were killed — Suzy’s father and brother. It’s the date that my daughter and I always share the dessert “Death by Chocolate” at a favorite restaurant, and cry-laugh over a tray of luscious decadence. Our family is known for its notorious chocolate abusers, who snack on it for celebrations, wakes, holidays, for doing a “good job,” or simply on low days to make us feel better.

I drive to the nursing home where Suzy lives to pick her up. Arriving in my wide RV to fit the wheelchair in back, I am stopped at the front door. Signs indicate that nursing homes in our state have closed to visitors because of Covid-19.

“No, Mom, no going out, no visitors,” says Nurse Ratchet, the head of Nursing. This isn’t her name, of course, but it’s what Suzy and I have secretly called her for four years, since the first month Suzy was admitted. Ratchet is wearing a mask, and it seems an improvement. No one here has ever worn a mask.

“Ms. Suzy can’t go out. The governor has issued a directive for an indefinite period.” She seems unusually stern and intimidating today.

Everyone at the ‘health center’ calls my beautiful black-haired daughter “Ms. Suzy” and they call me “Mom.”

I am stunned. “Can’t she just come outside and sit on the picnic bench? This is a special day for us.”

“No, Mom,” says the formidable nurse. “Patients are now quarantined, and no one can enter except medical and facility personnel. Residents can only leave for medical emergencies.” She sounds as if she has memorized the directive.

We don’t get a parting hug or kiss; we don’t get Death by Chocolate. It is the last day I will go inside a restaurant for a year.

During the next two weeks, I begin learning the ropes: wear masks and disposable gloves at the grocery store. Stand in lines outside in the cold because only a certain number are permitted inside at one time. Wipe everything down that comes into the house. Wash hands, don’t touch your face, wash hands, keep the space. Everyone becomes skilled in the drill.

The end of March is Suzy’s birthday. I stand at the nursing home door with a balloon and a decorated cake. A receptionist meets me outside to say that food is rejected unless it’s pre-packaged or in a can. At this time, it is not known if Covid contaminates people via food. The balloon is wiped down and delivered. I go home and eat the chocolate cake alone.

April, 2020

Suzy has no phone in her room but uses a tablet with the Messaging app, so she chats via video. Our faces always look shadowy and enormous on the screen. I can hear her tears, her fears, as she tries to stifle both. She reports that a man on her floor, as well as a nurse, came down with Covid. Most of the residents are elderly, or sick and feeble, though occasionally there are younger people who stay for short rehab stints. My daughter is typically shy at first but gets around to greeting them. She was always a social leader. Before becoming disabled, Suzy was known for her compassionate stances on social justice issues, in school and, later, in her medical transcription business. For some reason, I think of Nelson Mandela (South African anti-apartheid revolutionary) who was a brave leader even while he was in prison.

At age 46, Mandela was consigned to the notorious Robben Island Prison for life. When he was granted “early” release, in 1991, he was 73. He had spent much of those 27 years in a 7’ x 8’ cell space, about the size of a suburban American’s guest powder room, with a straw mat for sleeping on the floor.

May, 2020

I am sleeping more than ever. Some days I don’t bother to get dressed. I read that thousands of sick/elderly/disabled people are dying in care centers across the U.S. As my mother lives in an assisted living home, I’m used to driving to different parts of town to deliver food and supplies to both her and Suzy — or taking them out on the rare days we all feel like it. Now, suddenly, I am also a virtual caregiver. I speak with my mom on the phone, though she is too hard of hearing to carry on much of a conversation. She is stuck in her apartment with meals coming to her door. Still, she needs supplemental food and personal items, and I deliver them. At least she isn’t chronically ill, although she could be depressed, I suspect, as she seems angry lately.

Mom is almost 93 and can usually handle emails and for that I am grateful. Suzy, on the other hand, can only manage short cryptic texts as her vision is poor and her eye-hand-brain coordination is worse.

I play a zillion games of Words with Friends, watch old classic movies, go days without looking in a mirror. I feel semi-paralyzed, like I’m sinking into the quicksand of time. I watch on the news the heartbreaking stories of families destroyed by Covid, the nurses, doctors and medical staffs who are working through shock, deprivation, fatigue to treat the masses that are flooding hospitals and emergency rooms.

Suzy’s dining room is closed, so residents are restricted to their rooms to eat alone. Every meal, alone. (There are now no distractions from the blandness of the Medicaid-supplied food.) I am told that this is to isolate them from employees who come from the outside, and from each other, and to protect employees from the residents. Suzy is a prisoner in her small room. I shudder when I think of spending 24 hours a day within a few square feet of living space.

In general, Coloreds and Indians received a slightly better diet than Africans, but it was not much of a distinction. The authorities liked to say that we received a balanced diet; it was indeed balanced — between the unpalatable and the inedible. –Nelson Mandela

June, 2020

The beginning of summer in lockdown is surreal. Stores turn off air conditioners and open doors allowing outside air flow, to prevent viral loading. Tired of fighting delays at hot stores, I have my groceries delivered. I have my mother’s groceries delivered.

Suzy texts me: “Man in next room dead. Covid.”

My mom emails: “The woman in 411 was taken out today.” That’s her euphemism for “died.”

I text Suzy and email Mom: “Please don’t worry, you will be fine. Just don’t touch your face and don’t forget to wash your hands.”

I am stunned with shock and dread. Will Covid float through the institutional walls and halls via air conditioning, into their mouths and noses? Chances are they will not be fine. I can no longer sleep. I’ve had enough of Quarantine and Death. How much more of this horror can we take?

Suzy won’t remember to not touch her face. She had been placed in the nursing home by her family who could no longer care for her; the multiple problems of multiple sclerosis became unmanageable. She needs 24/7 skilled care for her physical disabilities and cognitive damage. Her brain is often unpredictable: mostly she thinks like a woman, but sometimes like a little girl.

Suzy: “Mommy bring chocolate.” She doesn’t ask for pain relievers for her six-year headache; the girl wants her real drug, chocolate.

During his confinement, Mandela was allowed one visitor per year, for 30 minutes. He was permitted to write one (heavily censored) letter every six months.

July, 2020

Nurse Ratchet calls: “Ms. Suzy has tested positive for Covid. She will not be able to go the shower facility until further notice. We will bathe her using the sink in her bathroom.”

I call immediately. “Are you coughing? Do you feel hot?”

“No, I feel fine,” she says. “But Thor is sick.” (Thor is her goldfish.)

Nurses come hourly to take her vitals. A few people in the home test positive; two get sick; one dies. Most of the nursing staff keeps coming to work. They are dressed in full PPE, like blue angels. Suzy has gone for four months without a hug or a kiss, or without seeing anyone’s face. Thor is flushed down the toilet.

August, 2020

Suzy texts: “I can come outside. You have to sign up.”

I call the front desk and they inform me that appointments for a “meeting tent” are already full. I get a slot a week from now.

The day I arrive to sit under a tarp, it is 100 degrees. I bring Suzy an iced coffee, but they take it away and say I’m not supposed to give her anything to eat or drink. The chocolate bar melts in my purse. They take my temperature and make me sign a dozen papers assuring them that I have not been exposed to Covid. We sit six feet apart. She looks like death warmed over which is what I feel like. We are both pale and wan, but I dole out some “Yo-mama” jokes. She’s not buying them. I leave before the 45 minutes is up. People with M.S. are hot all the time, so summer heat is anathema.

Mandela worked by day in a grueling hot quarry, breaking big rocks into little chunks of gravel. (Sunglasses were banned; the limestone’s glare eventually damaged his eyesight.) This brilliant man spent years just hammering on stones, but this apparently allowed him plenty of time for reflection on his principal cause — apartheid.

September, 2020

No more outdoor visits. Again, no more going outdoors at all, not even on a protected patio. No more leaving her room to visit other residents. A doctor got Covid, so the health center is again in lockdown.

Suzy: “I’m in prison. Going to run away. Help me.”

This is the first time she has actually said HELP ME. What can I do? I think of making a scene with Nurse Ratchet, like Shirley MacLaine did in Terms of Endearment, but that would only make it worse for her. I want to run away.

Me: “I will come and wave at your window. I’ll be there in a half hour.”

I change out of my dirty pajamas and speed to her place. She seems so close but far away in the second-floor window. We talk through her Messaging app. She cries, I cry. I send up a bag of chocolate kisses.

My mom spends her 93rd birthday alone. I call and sing “Happy Birthday.” We talk for a while, although I have to shout my soothing sentences. Mom is angry that she cannot play bridge anymore or eat with her buddies in the dining room or see her family.

“This is like segregation!” Mom yells. “Old people apartheid.”

Separated from his wife and children, Mandela nonetheless wrote them letters, trying to keep his family relationships intact. He was unable to raise his children, but he tried to give their lives some guidance from his prison cell.

October, 2020

I’m allowed to see my mother outside in a courtyard. It is cooler now and visits are pleasant. Then Mom tells me she is “done living.” She doesn’t see the point if Covid is going to keep her a prisoner. I just say, “Please have hope.” And then I feel stupid. When you’ve lived 93 years, there’s only so much TV and knitting you can do. Everything is about seeing loved ones, about the comfort that comes from physical contact.

Halloween is Suzy’s favorite day. She dresses up in her usual costume: a giant yellow bag, with M&M written vertically. She has on her mask, which she is required to wear all the time, even to bed. No one sees her costume except for nurses and the housekeeper. She cannot leave her room — her tiny space — to walk the corridors. She takes a photo of herself (I don’t know how) wearing the M&M costume and emails the picture. It’s blurry, but it makes me laugh.

I begin to laugh like some kind of maniac. I laugh until my stomach hurts. I can’t stop. Now I’m cry-laughing like a hyena. I fold up into a ball on the floor. I reach up to turn the light off so I will not scare any trick-or-treaters who may come to the door.

No trick-or-treaters come to the door. This is my first Halloween that is really scary.

I have been fairly successful in putting on a mask behind which I pine for the family, alone …. I also never linger after visits although sometimes the urge to do so becomes quite terrible. I am struggling to suppress my emotions as I write this. -N Mandela

November, 2020

Suzy asks if I will kidnap her, bring her home for Thanksgiving. I tell her that next year I will. I keep saying those words … next year, next year. I think I’ve lost credibility. But it doesn’t matter because she doesn’t remember much of what I say. Life, for Suzy, is similar to the movie Groundhog Day. She starts over every morning at 6 a.m.

I wonder why she simply can’t think of escaping, temporarily, calling Uber and have them take her somewhere. Or conceive of having a pizza delivered. It’s the brain damage from M.S. Her cognitive disability is profound. If I were Suzy, wouldn’t I make a sign of protest and park my wheelchair at the busiest corner? She has no voice now. My mother has no voice. At one time, they both used their voice to change what seemed unfair, but it is gone.

Oddly… I am thankful. I message them and say, “We’re lucky. We haven’t gotten Covid!”

Newspapers and many books were banned in the prison, so Mandela’s intellectual pursuits were entirely self-sustained. Yet he was able to earn a law degree through a correspondence course from London.

December, 2020

Suzy said her nurse helped decorate her room, including a little Christmas tree with twinkle lights. I deliver packages to her, including pretty dresses. Then, I make a brilliant discovery: Uber delivers … chocolate brownies, chocolate cake, chocolate pudding, chocolate shakes, croissants filled with chocolate cream, ohboy!… and Nurse Ratchet allows it now. Joy, Joy, Joy!

I have so much chocolate delivered during holidays that Suzy gains weight and will not fit into the new outfits I bought her.

I shower my mother with gifts as well, but she is underwhelmed. She says she would rather die than spend another holiday season alone.

“What good is it?” she writes.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear — Nelson Mandela

January, 2021

Mom goes to the ER. I watch as she is taken by stretcher from the ambulance. Small and thin, her white hair sticks up like faded straw. She gives me a weak wave as they pass inside the hospital door. When she is diagnosed with a terminal kidney/liver condition, I am allowed inside.

My mother is resolute; she declines food. She only wants pain medication and sips of water to swallow it.

Suzy and I get the vaccine.

Still, Mandela was clearly a survivor. After leaving prison, he enjoyed a distinguished career and lived to the age of 95.

February, 2021

Valentine’s Day. I can visit Mom’s new place — a hospice nursing home — a few minutes a day. I bring a dozen of the last red roses she will ever see, ever smell. I lay the chocolate hearts on her tray. As she passes away, five days later, the blooms are just beginning to nod. I will keep them forever to breathe in their lingering fragrance.

March 12, 2021

I am escorted to visit Suzy in a conference room for 45 minutes and seated behind a plastic screen. We are told not to touch or hug. “You’re on your honor, Ms. Suzy and Mom,” Ratchet warns, closing the door behind her. As soon as we are alone, I move on the other side of the screen and hug my daughter until time is up.

“Good job,” I say.

We have survived the year on luck and love, bravery and chocolate.